Behind the Mystery: Hypophosphatasia (HPP)

Hypophosphatasia (HPP) is a multisystemic disease that can affect many areas of the body and can often be overlooked or not correctly diagnosed until later in life. Patients with HPP may experience a wide range of unexplained and debilitating symptoms that result in a frustrating journey to find relief. Persistently low alkaline phosphatase (ALP) is a hallmark of hypophosphatasia. A simple blood test to detect persistently low ALP could be the key to an HPP diagnosis. Low ALP levels vary based on sex and age, so it is important to talk to your doctor about your results. Endocrinologist Dr. Diala El-Maouche provides disease education, and HPP Patient and Advocate Cindy shares her journey with HPP, while the President and Founder of Soft Bones, Deb Fowler, and VP of Patient Experience and Advocacy at Alexion, AstraZeneca Rare Disease, Wendy Erler, share the importance of partnership between industry and advocacy. US/UNB-H/0644 V1 09/2024
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[@orkilatrish]

I was 38 before I met another person with HPP who wasn't in my family. thanks to Soft Bones, I'm joining a clinical trial for gene therapy and get to talk to doctors who actually know and understand HPP for the first time. It's been incredible. 😊

[@NinaVera-x1y]

Same!!

[@NinaVera-x1y]

This is amazing!!! Soo thankful this episode is about HPP!! Thank you Deb , Cindy, and all the others!!❤

[@carilevy3668]

frustrating journey . So grateful for segments like these

[@kendradennison5589]

Cindy is an awesome resource for others! 🎉

[@mayfairwells4835]

I'm crying.

[@TarinHewlett]

I was 3 months old when I was diagnosed.